WERE OUT

We talked to the PA last night when we came back from our day trip.  We voiced our concerns about staying in the hospital.  The only thing that was keeping her here was that darn rash.  She has not had any side effects with the rash like fever, bloating or high blood pressure.  I told her that we lived 4 minutes away from the hospital and I have not left her side since this all happened.  If anything happened we would be up to the hospital immediately.  I told them if they wanted us to come up to the clinic everyday or every 4 hours we would do it.  The only thing that they were doing for her in the night was giving her pain meds.  I told her that we could do all that at home.  She then told us that we could leave again for dinner but just be back before 8:30 pm to get her night meds.  Alyssa was getting more and more frustrated as the day and night wore on.

When we woke up this morning the PA came in and told us that she took our concerns to Dr. Peterson.  He told her that he agreed with us.  So we got to go home today.  We have to come up to the clinic on Friday and they have to monitor the rash but that is okay because we don't have to be here.  After rounds they came back and asked her how she felt about getting her central line out.  We were thrilled to hear that.  We packed up her room and then sat around to have her central line taken out.  I can't believe how long it takes to be checked out of the hospital. 

We are so excited that this chapter of her life is done.  We are excited to start living again.  On another note the buyers of our house backed out of it so we are back to square one with that.  We have always thought that it will sell when the time is right.  Kirk and I were not to thrilled with the offer so I am sure that a better one will come along.  We have another showing on it tomorrow.  We hope that it doesn't take too long.  We are living in an apartment 4 minutes away from the hospital until Alyssa's rash has been cleared up.  After it is clear will move in with my parents until we can get into a house. 

Thank you all for all of your prayers and concern for our family.  Go give blood and think about being a bone marrow donor.  Alyssa would not be here if people had not donated those things.  Enjoy the little things in life. 

Very Frustrated again

Alyssa's rash is not getting any better with the steroids.  I asked this morning at 8:00 am if she could have a day pass again.  The nurse said she would talk to the doctor.  At 11:30 Alyssa asked for some more pain medication and I asked the nurse what the doctor said.  She told me that she had not gone to rounds yet.  Seriously.   Finally around 12:30 she came back with the pa.  They told her that they needed to take a skin biopsy to try to figure out what is going on with this rash.  I asked I why she needed to be in the hospital.  The doctor told me it is because of the steroids that they are giving her.  I told him I gave her things in her central line last time we went home.  He could never give me a straight answer.  They told her that she could leave but she needed to be back by 5:00.  By this time it was close to 1:30.  We went and got something to eat and did our laundry.  Played a quick game of skipbo and then came back to the hospital. 

Alyssa and I are very frustrated at this point.  We are really getting fed up being in this place.  I told her when we got back here that we needed to look for one positive thing a day.  Maybe that will brighten up her day.  I am at a lose as to what to do for her to help her.  Keep her and her doctors in your prayers to find out what is wrong with her and get her out of here.

Happy sunny day

Alyssa got another day pass today.  We drove up to Kaysville to see if we could find some houses we liked.  We then went to the apartment and made lunch and choc. chip cookies.  Alyssa had a nap along with her mom.  We then came back to the hospital.  Hopefully we leave the hospital tomorrow.  I guess we will have to wait and see.  Her rash seems better but not 100% yet.

Another day

Alyssa had a melt down last night.  I think everything just came to a head.  She thinks that she will never get out of the hospital.  She is afraid to make any plans in fear that something else will happen to her and she just wants her old life back.  While she was having her melt down the night nurse came in and she was so cute with Alyssa.   When we woke up this morning the nurse asked me what time I was going to my mom's birthday party.  I told her what time and then I asked her why.  She told me that she was going to see if Alyssa could get a day pass to go.  She went and found the PA and the doctor and they both said that my parents house was a little far to go but she could go somewhere within 30 minutes of the hospital.  She got released from her iv pole.  Kirk and her went to the grocery store and went to the apartment and made lunch.  Me, Kelsey and Bryan went to parents house for my mom's birthday party.

Kirk said that she got tired very easy but enjoyed not being in the hospital and hooked to the iv pole.  Her rash is slowly going away.  She seems to be in better spirits after having a good cry.  I am so proud of her.  I think that I would have a melt down long before this.  We still don't know how long we are going to be here but I am sure that we will get some more day passes to leave.  I can't believe how it helps her to just leave this place.

Better Day

Alyssa woke up with the rash all over her body.  When the nurse came in we told her that she needs to have something to stop this.  She agreed with us and told the doctors when she went into rounds.  She is eating good again and they have decreased her nutrition bag by half.  The dietitian told her that she is getting rid of that soon because she eats really good.  All of her meds have been changed to pill form and she has started to cut back on the nausea meds.  As soon as the rash gets under control then the pain pump can be removed.  They have given her steroids for the rash and that is helping a lot.

Her spirits are better.  We watched the "royal wedding" all morning long on the internet.  It was fun to watch.  I remember watching when Charles and Diana got married.  We really loved her dress and her sister's dress. 

All in all the day has been good.  Thanks for all of the love and support.

Breaking News

We sold our house this morning.  We are pretty excited that we don't have to worry about that anymore. 

Now on to Alyssa's news.  Her rash has continued to get worse.  They say that it is because her numbers came in so fast and her body doesn't know what to do about it.  She wouldn't push her pain button on the pain pump because she thought that if she didn't push it, that would make her go home faster.  We finally convinced her that her body can't get better if she is in pain.  The pain nurse told her this morning that she can be taken off the pain pump in the morning and go home that afternoon.  That seemed to encourage her so she has started to push the button again.

Her throat doesn't hurt anymore and she doesn't seem to have the thick saliva in her mouth.  She has eaten oatmeal and juice this morning.  She is eating mac & cheese, cooked carrots and mashed potatoes and gravy, & apple juice.  We went outside for awhile this morning and we are going to go out again. 

She just talked to the PA and they are going to try a topical cream to see if that calms the rash down.  They can give her steroids for the rash but that is the last resort.  She is discouraged because everyone up here has told her that she would feel so much better when her counts came in but she feels worse.  We keep telling her that she is going in the right direction and this is just a little bump.  We are still shooting to get out on Monday. 

The saga continues

Alyssa started getting a rash last night on her chest, armpits and face.  The nurse gave her some benadryl and then put her on oxygen.  I spent half the night reassuring her that she was not going to ICU.  When she woke up she still had the rash and it had spread to her hands.   I left and slept for awhile because I had hit my breaking point.  (Thanks Mike  & Lisa for the apartment, it was wonderful)  Kirk said that while I was gone she had some applesauce and a little bit of cinnamon roll and milk.  Also she had a little bit of fettuccine.  When I got back up to the hospital she started gagging on the thick saliva and the fettuccine came back up.  The PA came in and looked at the rash and ordered some cream for it.  He told her that he would start gradually converting her medicine back to pills. 

Her doctor just saw her and said that the rash might be graft syndrome.  It happens sometimes when the counts come in really fast,  which her has.  Her counts yesterday were 1200 today they were 6400.  He told her that she could go outside for a minute just to get her spirits up.  She feels like she is taking steps backward and they have reassured her that she is not.  Kirk told me that she has not pushed her pain medicine since 8:30 this morning.  Hope tomorrow goes better.   She wants so desperately to get out of here.